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FOREWORD

It is now more than 18 years since the late Professor David Baum wrote theforeword to the first Withholding and Withdrawing Life Saving Treatment inChildren document. Since then the practice of paediatrics has changed radic-ally. We are now seeing increased survival rates for infants born between22 and 25 weeks gestation, new gene therapies stretching the boundaries ofpossibility, and advances in paediatric surgical techniques unimaginable in thelast millennium.

Against this backdrop, we are in an era of ubiquitous access to the internetand widespread use of social media. Children, young people, their parentsand carers have very different knowledge and expectations of a condition andits treatment. Children and young people rightly expect to be fully involved indecisions about their treatment options wherever this is feasible and we mustbe able to communicate those options clearly and honestly.

In this extraordinary world of medical miracles, one thing has notchanged; the complexity, challenge and pain of that most difficult of deci-sions: is the treatment we are providing no longer in the best interests of thechild? There is no technology to help us here—only guidance, discussion,and adequate time and information for truly shared decision making. Ourcommitment to the child’s best interests must start before birth and continuethrough to palliative and end of life care. Even after death, a duty to providebereavement support for parents and siblings is the natural conclusion to thedifficult decisions we have made with them in the preceding weeks andmonths.

This latest guidance on arguably the most difficult aspect of paediatric carehas updated the decision making framework and incorporated more extensiveadvice on the direct involvement of children and young people. It also takesaccount of the broader possibilities flowing from developments in paediatricpalliative care.

This is a live document and a starting not an end point for discussion andlearning, I commend it to you.

Hilary Cass

President Royal College of Paediatrics and Child Health (RCPCH)

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Preface s3

Executive summary s4

1. Introduction s6

2. Background considerations s62.1 Definitions s62.2 The extent of withholding and withdrawal

of LST in paediatric practices7

2.3 The legal framework s72.3.1 Statutes s72.3.2 The child and young adult s82.3.3 Parental Responsibility s82.3.4 The role of the courts in end-of-life

decision makings9

2.3.5 Best interests s92.3.6 Quality of life and legal decisions s102.3.7 Withdrawing treatment s10

2.4 The ethical framework s102.4.1 Fundamental considerations s102.4.2 The interests of the child s102.4.3 Parental discretion, responsibilities,

rights, duties and powers10

2.4.4 Parental interests, wishes andprofessional duties

s11

2.4.5 Involving children s112.4.6 Children with disabilities s112.4.7 Transition to adult services s122.4.8 Axioms on which to base best practice s12

3. The process of decision making s133.1 Practical considerations; substantial issues

in decision makings13

3.1.1 To withhold, to withdraw or to limit? s133.1.2 Dealing with uncertainty s133.1.3 Situations in which it is appropriate to limit

treatments13

3.1.4 Spectrum of decisions and parentaldiscretion

s14

3.2 Practical aspects of end-of-life care:responsibilities, treatments that may belimited, appropriate or permissible actions

s15

3.2.1 Clinical responsibilities of the healthcareteam

s15

3.2.2 The range of treatments that may bewithdrawn

s15

3.2.3 Cardiopulmonary resuscitation s153.2.4 Clinically assisted nutrition and hydration s163.2.5 Muscle relaxants and end-of-life care s163.2.6 Palliative care s163.2.7 Organ donation s17

3.3 Practical aspects of decision making s173.3.1 The basis of decision making by teams s173.3.2 Obtaining second opinions s183.3.3 Resource considerations s183.3.4 Communication as part of decision

makings18

3.3.5 Resolution of different opinions s193.3.6 Medical input s19

4. Bereavement s204.1 Families s204.2 The healthcare team s204.3 Key goals in the provision of bereavement

supports21

5. Future practicalities s215.1 Training s215.2 Resources s215.3 Research/audit s215.4 Clinical ethics services s21

References s21

Appendix 1: Suggested bereavement resources s23

Contents



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Making decisions to limit treatment in life-limitingand life-threatening conditions in children:a framework for practiceVic Larcher,1 Finella Craig,2 Kiran Bhogal,3 Dominic Wilkinson,4 Joe Brierley,1,5

on behalf of the Royal College of Paediatrics and Child Health

1c/o Ethics and Law AdvisoryCommittee RCPCH, London,UK2Louis Dundas Centre forChildren’s Palliative Care, GreatOrmond Street Hospital forChildren NHS Foundation Trust,London, UK3Partner, Weightmans LLP,London, UK4Oxford Uehiro Centre forPractical Ethics, University ofOxford, Oxford, UK5Paediatric and NeonatalIntensive Care Unit, GreatOrmond Street Hospital,London, UK

Correspondence toDr Vic Larcher, c/oadministrator (J Pettitt), Ethicsand Law Advisory CommitteeRCPCH, 5-11 Theobalds Road,London WC1X 8SH;[email protected]

Received 9 March 2015Accepted 11 March 2015

To cite: Larcher V, Craig F,Bhogal K, et al. Arch DisChild 2015;100(Suppl 2):s1–s23.

PREFACEThe first edition of the Royal College of Paediatrics and Child Health (RCPCH) document‘Withholding or Withdrawing Life Saving Treatment in Children: A Framework for Practice’was published in 1997 and was one of the first documents produced by the newly-formedCollege. The first edition followed a series of workshops, public meetings and discussions inthe Ethics Advisory Committee. There was consultation with a wide range of clinicians, repre-sentatives of faith groups and parents’ groups and from individuals with disabilities themselves.Given the difficult and emotive nature of the subject, and the significant number and differing

views of those consulted, the original document acknowledged the impossibility of achievingtotal consensus, but did identify common ground on which a framework could be built. Theframework document was widely used; it did inform constructive debate and provided clarifica-tion in this difficult and emotive area.The second edition, published in 2004, reflected changes in practice and new legislation but

retained the same ethical and legal principles as the first.1 Its title was changed from ‘life-savingtreatment’ to ‘life-sustaining treatment’ to reflect the fact that the treatment that is often givenin these circumstances is not curative but supportive.The need for a revision of the document has been considered over the past 2 years by the

Ethics and Law Advisory Committee of the RCPCH (ELAC-RCPCH). Once again, we haveconsulted those who have used the document and have incorporated comments from indivi-duals and groups, both in the UK and elsewhere. As before we have attempted to synthesise dif-fering views and values in reaching a consensus. We were also mindful of the change inemphasis in decision making with individuals with life-limiting conditions, as exemplified in theGeneral Medical Council (GMC) document: ‘Treatment and care towards the end of life: goodpractice in decision making’.2 We have incorporated relevant case and statute law decided orenacted since the last edition. We have also taken into account developments in palliative careprovision and the growing availability of ethical and other support in decision making, as wellas issues that have arisen in response to the two previous documents. In particular, we havereplaced the five criteria that were previously used to identify situations in which limitation oftreatment might be discussed with a more formal classification based on quantity or quality oflife. We have included a category that formally acknowledges the wishes and preferencesof those young people who are able to make decisions for themselves, albeit with the supportof their families and professionals.We accept that decisions to withhold, withdraw or limit life-sustaining treatment in children

with life-limiting or life-threatening illness may still prove contentious, difficult and emotive.Once again, we have attempted to provide a framework for practice that is not prescriptive andthat attempts to recognise the interests of the child both in his or her own right but also as partof their family. We accept that determining the best interests of an individual child is complex;nevertheless it remains a fundamental consideration in the kind of situations to which this docu-ment refers.

We emphasise two important points so as to avoid confusion:1. This document sets out circumstances under which withholding or withdrawing life-

sustaining treatment might be ethically permissible—NOT circumstances under which suchtreatment must certainly be withheld or withdrawn.

2. The document describes situations in which individual children should be spared inappropri-ate invasive procedures—NOT types of children to whom appropriate procedures should bedenied.

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Executive summaryThis document, like the two editions that preceded it, is intendedto provide an ethical and legal framework for making decisionsto limit life-sustaining treatments (LST) in life-limiting and life-threatening conditions in children. It has been revised to reflectboth changes in the scope and availability of advanced technolo-gies and in the emphasis and application of ethical and legal prin-ciples to decision making. It sets out circumstances under whichwithholding or withdrawing life-sustaining treatment might beethically permissible—NOT circumstances under which suchtreatment must certainly be withheld or withdrawn. In particularit describes situations in which individual children should bespared inappropriate invasive procedures—NOT types of chil-dren to whom appropriate procedures should be denied. It takesaccount of the wider interests of children and of families andtheir greater involvement in the decision-making process. It alsoreflects the increasing availability of children’s palliative care ser-vices and of other support services for all those involved.

Despite increased options for the provision of end-of-lifecare, many deaths still occur in hospital settings following deci-sions to withhold, withdraw or limit LST.

The Royal College of Paediatrics and Child Health (RCPCH)acknowledges the sensitive and challenging nature of such deci-sions for all concerned. It respects the sincerely held differencesin values and beliefs and the diverse cultural factors that impacton the process and reaffirms the need to achieve a consensuswithin an ethical and legal framework.

The legal considerations and the basis for making decisionsfor withholding and withdrawing LST are grounded in bothstatute and case law. The guiding principle remains that of deter-mination of the child’s best interests, albeit with greater consid-eration of the interests of families and of their rights.

The ethical basis for withholding or withdrawing LSTinvolves consideration of a child’s best interests. It too reflects achange in emphasis that places greater recognition of children’srights to be actively involved in decision making, whilst consid-ering broader family interests.

The RCPCH reaffirms the application of these ethical andlegal principles to the process of decision making. Hence allmembers of the child health team, in partnership with parents,

have a duty to act in the best interests of the child. In so doingthe RCPCH is mindful of the obligation to take account of andrespect the value that children and young people and their fam-ilies place upon their lives. Nevertheless treatments that are nolonger in the child’s best interests may be withheld, withdrawnor limited. This applies to treatments that merely sustain life butthat neither restore health nor confer overall benefit.

Increasingly children with life limiting illnesses will livebeyond their 16th or 18th birthdays. Arrangements for transitionshould accord with best practice and be subject to age-appropriate or age-determined legislation. Limitation of treat-ment decisions should be in accordance with age-related ethicaland legal guidance.

The RCPCH believes that there are three sets of circum-stances when treatment limitation can be considered because itis no longer in the child’s best interests to continue, becausetreatments cannot provide overall benefit:

I When life is limited in quantityIf treatment is unable or unlikely to prolong life significantly it maynot be in the child’s best interests to provide it. These comprise:A. Brain stem death, as determined by agreed professional

criteria appropriately appliedB. Imminent death, where physiological deterioration is occur-

ring irrespective of treatmentC. Inevitable death, where death is not immediately imminent

but will follow and where prolongation of life by LSTconfers no overall benefit.

II When life is limited in qualityThis includes situations where treatment may be able to prolonglife significantly but will not alleviate the burdens associatedwith illness or treatment itself. These comprise:A. Burdens of treatments, where the treatments themselves

produce sufficient pain and suffering so as to outweigh anypotential or actual benefits

B. Burdens of the child’s underlying condition. Here the sever-ity and impact of the child’s underlying condition is in itself

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sufficient to produce such pain and distress as to overcomeany potential or actual benefits in sustaining life

C. Lack of ability to benefit; the severity of the child’s condi-tion is such that it is difficult or impossible for them toderive benefit from continued life.

III Informed competent refusal of treatmentAdults, who have the capacity to make their own decisions, havethe right to refuse LST and to have that refusal respected. So anolder child with extensive experience of illness may repeatedlyand competently consent to the withdrawal or withholding ofLST. In these circumstances and where the child is supported byhis or her parents and by the clinical team there is no ethicalobligation to provide LST.

In situations other than those described, or where there isuncertainty about the nature of the child’s condition or its likelyoutcome, treatment should be continued until greater certaintyis possible. The degree of certainty should be proportionate tothe gravity of the decision to be taken. Adequate time must beallowed to collect evidence and this may entail obtaining secondopinions from clinicians with appropriate skills, knowledge andexpertise of the child’s condition.

Decisions to limit treatments—or what treatments should begiven—should be made by clinical teams in partnership with, andwith the agreement of, the parents and child (if appropriate).They should be based on shared knowledge and mutual respect.Where possible they should be made in advance of acute eventsin the form of care plans and be available for all relevant parties.

A wide range of treatments may be withheld or withdrawn ifit is in the child’s best interests to do so. They include cardio-pulmonary resuscitation, clinically assisted nutrition and hydra-tion as well as mechanical ventilation. Limitation of treatmentagreements are increasingly used because of the greater range ofoptions in decision making they offer.

Decisions to limit LST do not constitute withdrawal of care.Treatments, including palliative care, that are intended to relievesuffering of the child and his or her family produced by illnessesand their treatments or by disability, are ethically justified. They

should be offered early in the course of life-limiting or life-threatening illness.

Any discussion about organ donation from a child who isapproaching death must be handled with skill and sensitivity. Alldecisions about organ donation should be made entirely inde-pendently from those regarding withholding or withdrawinglife-sustaining treatment.

The primary consideration in decisions to limit LST is whetheror not treatment is in the child’s best interests. However, deci-sions about treatment options may be increasingly complicatedby resource constraints. Healthcare teams may not be justified inproviding treatments that are highly expensive or of limited avail-ability and that appear to offer little benefit to the child. Ideally,such decisions should be based on clear and consistently appliedpolicies developed at institutional, local or national levels.

Communication, within healthcare teams and with parentsand children is important and should also include those in thecommunity who also have a duty of care to the child.Communication of information should be in a form and givenat a pace that is appropriate for children and families and takesaccount of any special needs they have.

Because of the sensitive nature of the discussions to limittreatment, differences of opinion, often based on sincerely heldbeliefs and values, may occur between any of the parties. It isimportant to understand and attempt to resolve these differ-ences using recognised support services for example, PatientAdvice and Liaison Service (PALS), Clinical Ethics Services,chaplaincy. In cases where differences cannot be resolved bythese means legal intervention may be necessary with courts asthe ultimate arbiter of best interests.

Professional duties and responsibilities do not cease when achild dies and the provision of bereavement support services forfamilies and support for staff are increasingly recognised asnecessary parts of the grieving process for all involved.

All clinical staff should have access to continuing professionaltraining and education in communication skills, ethics and theissues raised by decisions to limit treatments. The process shouldbe audited to ensure that the physical and emotional needs ofchildren and their families facing such decisions are met.


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1. INTRODUCTION

The key purposes of medicine are to alleviate suffering, restorehealth, sustain life and prevent disease. In paediatrics, membersof healthcare teams work in partnership with children and theirparents to achieve these objectives. The healthcare team, formedof healthcare professionals, consists of nursing staff, play specia-lists, educational specialists, medical staff (inclusive of thegeneral practitioner), and staff from the professions allied tomedicine. The team should in all cases work closely with theparents and the child. The ethical and legal rationale for alltreatments, present and future, is that they should be in the bestinterests of the child.1–3

The application of technology has led to the development oftreatments that can sustain life in circumstances where this waspreviously impossible. But some treatments may neither restorehealth nor confer overall benefits to the child. They, and thenature of the condition which the child has, may produce painand suffering for the child and their families that may be hardfor them to bear. This leads to dilemmas as to whether treat-ments that are technically feasible should be used.

Some of the most challenging and emotionally complex deci-sions arise in relation to withholding, withdrawing or otherwiselimiting treatment that has the potential to sustain life, butwhich imposes burdens or has serious impacts. Such decisionsinevitably involve value judgements about what should be pro-vided; there may be legal uncertainty about what is permissible.They may have to be made in a context where absolute certaintyover outcomes does not exist. Whatever the outcome of thedecision-making process, children and their families need high-quality treatment that provides them with comfort and supportand that is delivered with appropriate expertise.

Despite the increasing availability of guidance from profes-sional and other bodies, many healthcare professionals, patientsand families in these circumstances continue to need practicalhelp in making decisions.

The purpose of this document is to provide a framework inwhich decisions can be made that are in the best interests of thechild and in accordance with the principles of good medical(clinical) practice.3 This document primarily sets out to providehelp and guidance for members of healthcare teams, but wehope that it may also increase the understanding of parents andfamilies and others who confront these decisions. It conformsto established ethical principles as they apply to children andtheir families. It is also consistent with current UK law; but it isneither a legal text nor a substitute for seeking legal advicewhen it is appropriate to do so.

This document acknowledges that absolute agreement in deci-sion making may be neither practical nor achievable, but recog-nises the obligation to seek as much common ground as possible,whilst accepting there will be sincerely held differences of opinion.

Decisions to withhold, withdraw or limit life-sustaining treat-ment involve a change in the goal of care from cure to symptomrelief. This document outlines the circumstances in which suchdecisions might be appropriate and in which end-of-life caremight be appropriate. The latter includes palliative care that isfocussed on relief of symptoms and the provision of psycho-logical, social and spiritual support for children and their fam-ilies so as to maximise the quality of life that remains.

This document, whilst remaining grounded in the ethical andlegal principles set out in the 1997 and 2004 editions, alsoreflects changes in emphasis in the decision-making processand the provision of palliative care that have occurred in thisperiod.

2. BACKGROUND CONSIDERATIONS

2.1 DefinitionsThis document especially applies to children with life-limitingor life-threatening conditions. Life-limiting or life-shorteningconditions are those for which there is no reasonable hope ofcure and from which children or young people will die. Life-threatening conditions are those for which curative treatmentmay be feasible but can fail.3 These will include: -a. children with advanced progressive incurable diseaseb. children whose death is expected in the foreseeable futurec. children in whom there is a risk of death from a sudden

acute crisis in the conditiond. children in whom sudden catastrophic events have produced

a life-threatening situatione. children in whom the prospect of survival is small, for

example, some extremely premature infantsLife-Sustaining Treatments (LSTs) are those that have the

potential to prolong life. They may include experimental ther-apies that are not validated by research, as well as more conven-tional treatments such as Cardiopulmonary Resuscitation (CPR),mechanical ventilation, intravenous inotropes, antibiotics, renaldialysis and Clinically Assisted Nutrition and Hydration(CANH). Evidence for burdens and benefits of LST in specificindividual circumstances may not always be available.

There are several different types of decision made about LST.Treatment that has not been commenced may be withheld.Alternatively, decisions may be made to withdraw treatment thathas already started, or to impose limits on that treatment (forexample by agreeing on a maximum level of respiratory or car-diovascular support that will be provided).

Palliative care (see ‘Palliative care’) for children and youngpeople with life-limiting conditions is an active and totalapproach to care that continues from the point of diagnosis orrecognition throughout the child’s life, death and beyond.It embraces physical, emotional, social and spiritual elementsand focuses on the enhancement of quality of life for the child/young person and support for the family. It includes the man-agement of distressing symptoms, provision of respite care forchildren and families and care through death and bereavement.4

Palliative care can be given alongside active interventions; it isnot confined to situations where a decision to withhold or with-draw active treatment has been made.

Best Interests. Throughout this document the term ‘best interests’has been used in the sense used in law (the five point welfare checklist of the Children Act 1989; the 9 point check list of the MentalCapacity Act 2005 as applied to over 16-year olds) and in pub-lished professional guidance (GMC End of life Care 2010; GMC0–18 years: guidance for all doctors 2007). No single formulaapplies but determination of clinical best interests involves balan-cing benefits and burdens (of whatever type) of treatments and out-comes, whilst considering the ascertainable wishes, beliefs andvalues and preferences of the child and their family, the culturaland religious views of the latter, the views of those providing carefor the child and what choice is least restrictive of future options.

2.2 The extent of withholding and withdrawal of LSTin paediatric practiceAround 3700 children (defined as those aged between 28 daysand 19 years) and 2100 neonates still die each year in Englandalone.5 In comparison with adults, a greater proportion of chil-dren who die in hospital do so within the intensive care setting,and this number is increasing.6 Hence many children die inan environment of aggressive organ support made possible by




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technical developments such as Extra Corporal MembraneOxygenation (ECMO) or Berlin heart devices, or by organtransplantation or multiple stem cell therapies. The range oftherapeutic and palliative options for children with life limitingconditions has expanded, so that some interventions, with rela-tively high acute impacts for children are now provided, whenthis was previously not the case. Increasingly children with lifelimiting conditions live beyond their 16th to 18th birthdays sothat arrangements for the transition to adult services forongoing care and support is important.

Since the production of the first edition of this document in1997 there has been increasing collaboration between palliativeand intensive care services and adult services, with the intentionto optimise the care of children with life-limiting or life-threatening conditions. Although the challenges in providinghigh-quality care in the differing settings of the intensive careunit and the home or hospice remain, the recent production ofshared guidance in managing some situations is a positive devel-opment (see for example, the recent Association for Children’sPalliative Care (ACT)/Together for Short Lives (TfSL) document,‘A care pathway to support extubation within a children’s pallia-tive care framework’7).

End-of-life practice in UK PICUs has remained fairly typicalof the Northern European approach, as demonstrated in theEurydice studies of ‘Forgoing life-sustaining treatments in chil-dren’.8 9 Most deaths follow withdrawal or limitation of LSTs,rather than failed resuscitation.10 Overall this proportion hasincreased in recent years.11 12 A similar pattern is seen in theneonatal intensive care environment.13

There is growing acceptance that such practices are ethicallyacceptable provided that there is no overall benefit in continuingtreatment.14–16 In the US, guidance has been produced that con-siders forgoing medically provided nutrition and hydration, butsuch specific guidance has yet to be developed for the UK.17

Other professional and regulatory bodies have produced guid-ance in decision making towards the end of life, though they aremore generic and not specifically focused on the child and hisor her family.2 18

However, all accept the principle that medical treatment canlegally and ethically be withdrawn when it is unable to provideoverall benefit, when it is no longer in the patient’s best inter-ests, or if the patient has refused it.2 18

Recognition that aggressive and invasive therapy may not be inan individual child’s best interests can be a gradual process, but isincreasingly informed by timely open discussion between allparties involved and in advance of acute episodes of deterioration.Defining a child’s best interests and whose views should countmost, may also be a source of disagreement. It has occasionallybeen necessary to refer cases to court for resolution. The outcomeof some cases and the principles underpinning individual judg-ments which may help with decision making are set out in ‘Thelegal framework’. Recent practical experiences in end-of-life deci-sion making with children and families have demonstrated thatpotential conflicts can be avoided by frank, open and consideratedialogue and the early involvement of supportive groups fromhospitals and the community (see ‘Bereavement’).19

2.3 The legal frameworkThis section provides an overview of the current law that wouldapply to end-of-life decision making. It is neither a comprehen-sive account of statute and common law, nor is it a substitutefor obtaining legal advice in the individual case. Each case isunique and should be considered and decided on its ownindividual facts.

All healthcare professionals have a legal duty of care towardstheir patients and are bound to act within the framework of thelaw. The law articulates standards of behaviour by prohibitingcertain actions and allowing others. Any practice or treatmentgiven with the primary intention of causing death is unlawful.20

All cases relating to withholding or withdrawing LST aredecided in accordance with the common law, ie case law. Thecourts will consider and decide each case on its own facts.

2.3.1 StatutesA. The Children Act (England and Wales—1989 and 2004;Scotland—1995)21

The Children Act provides an overall statutory framework fordelivery of children’s services, and the rights and responsibilitiesof parents. It makes no specific provisions for withholding orwithdrawing treatment but enunciates important principles thatunderpin practice, the most relevant of which are:▸ A child’s welfare is of paramount consideration when

making decisions about the child.▸ Particular regard should be paid to the ascertainable wishes

and feelings of the child and any harm which the child hassuffered or is at risk of suffering.

▸ Parental rights and duties must be exercised in the child’sbest interests.

B. The United Nations Convention on the Rights of the Child22

and the Human Rights Act 199823

The United Nations Convention on the Rights of the Child(UNCRC) applies to all children and young people under theage of 18 and was ratified by the UK in 1991. Whilst it cannotbe directly applied in UK courts, ratification means that the UKgovernment is bound to honour it and to make all laws, policyand practice applying to children compatible with it.

The Human Rights Act (HRA) 1998 incorporates and giveseffect in the UK to the rights and freedoms guaranteed underthe European Convention on Human Rights (ECHR). The mostrelevant convention rights with respect to decisions to limit LSTin children are:Article 2: the right to life and the positive duty to protect itArticle 3: the prohibition of inhuman and degrading treatmentArticle 5: the right to liberty and security of the personArticle 8: the right to respect for private and family lifeArticle 9: the right to freedom of thought, conscience and religionArticle 14: the prohibition of discrimination in respect of enjoy-ment of the other rightsAlthough there is a positive obligation to protect life, in

certain cases treatment can be withheld or withdrawn, where itis in a child’s best interests to do so, even if this will result inthe child’s death. When tasked with intervening in disputeswhich have arisen over the withholding or withdrawing of treat-ment, judges seek to balance the duty to respect and protect life(Article 8) against the duty not to inflict inhuman and degradingtreatment (Article 3), whilst attempting to respect the provisionsof Articles 8 and 9.

C. The Mental Capacity Act 2005 and the Adults withIncapacity (Scotland) Act 200024

These Acts provide the legal framework for acting and makingdecisions on behalf of individuals aged 16 and 17 (‘youngpersons’), who lack the mental capacity to consent to treatmentand/or make particular decisions for themselves.

Decisions must be made in the best interests of the youngperson who is assessed as lacking capacity to consent by the




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healthcare professional responsible for the young person’s carein accordance with criteria set out in the Acts.

Young persons will lack capacity to consent if they are unable to(a) understand the information relevant to the decision, (b) retainthat information, (c) weigh that information as part of the decision-making process and (d) communicate the decision reached(whether by talking, using sign language or any other means).

When assessing the young person’s best interests, the health-care professional must consult with those involved in the youngperson’s care and anyone interested in their welfare—if it ispractical and appropriate to do so– in order to help them reacha decision on best interests. The extent to which the youngperson’s parents are consulted will depend on the particular cir-cumstances and healthcare professionals will need to take carenot to breach the young person’s right to confidentiality.

D. The Equality Act 201025

The Act brings together many separate pieces of legislation toprovide a single legal framework to protect the rights of indivi-duals and to provide equal opportunities for all regardless ofage or disability. It protects people from discrimination in thework place, education and the wider society. It protects disabledpeople from discrimination and unfair treatment arising directlyfrom their disability and indirect discrimination arising from theapplication of a rule, policy or practice that applies to all but isparticularly disadvantageous to those with a particular disability,compared with those who do not have it and cannot be shownto be justified as being intended to meet a legitimate objective ina fair, balanced and reasonable way. The Act also provides pro-tection against victimisation or harassment.

E. Children and Families Act 201425a

The Children and Families Act is a recently enacted, wide-ranging piece of legislation intended to improve services for keygroups of vulnerable children, including those with disability. Animportant provision is the ultimate replacement of Statements ofEducational Need by person centred, co-ordinated Education,Health and Care (EHC) plans designed to meet the child’s educa-tional health and welfare needs. The general principles andmatters to be considered in EHC assessments and plan formula-tion are similar, albeit in different clinical circumstances, to thoseinvolved in the formulation of advance care plans. The processof making decisions to limit LSTwill need to take due account ofany relevant EHC plans.

2.3.2 The child and young adultThe Children Act 198921 requires that particular regard must begiven to the ascertainable feelings and wishes of the child, in thelight of the child’s age and understanding, as well as any harmwhich the child is suffering or at risk of suffering. Under theterms of the Children Act. Health professionals and parentsmust always seek to involve the child in any decisions beingmade about them, in a way that they can understand. This isparticularly relevant in cases involving LST and decisions to dis-continue it.

The Mental Capacity Act 2005 and the Adults with Incapacity(Scotland) Act 2000,24 though applying to those (aged 16 andover) who lack capacity to consent, does not permit those under18 to make advance decisions (also known as advance directives)or create a Lasting Power of Attorney (appointing another tomake health and welfare decisions on their behalf ).

Unless given in a genuine emergency, all medical treatmentrequires consent that is informed and freely obtained from a

person who has capacity. Proposals to change the goals of treat-ment or to withhold, withdraw or limit LSTalso require consent.

When involved with children or young persons, the followinggeneral principles apply:▸ In England and Wales, children aged 16–17 years are pre-

sumed to have capacity to consent to treatment,26 but theycannot refuse treatment that is considered to be in their bestinterests. Legally, a parent can consent to treatment even if acompetent young person refuses treatment.

▸ In Scotland, children over 16 years may both consent andrefuse all treatments provided they have capacity.

▸ Where a child (young person) of 16–17 years lacks capacity,consent can be given by a person who holds ParentalResponsibility (PR).

▸ Children under 16 may consent to treatment (in their bestinterests) if they are capable of fully understanding the impli-cations of their decision.27 The Gillick test is commonly usedto ascertain whether a child (aged 16 years or younger) isable to consent to his or her own medical treatment, with orwithout the need for parental consent and/or knowledge. Forthe child to be Gillick competent, the child must have suffi-cient maturity and understanding to take a decision of theseriousness in question.

▸ A child may refuse LST where parents and clinicians agreewith that refusal. However, where there is no such agreement,the child’s refusal may be overridden by those with PR or bythe Court if it is considered in their best interests to do so.The Children’s Act and the UNCRC place emphasis oninvolving individual children, in accordance with their ageand capacity, and giving due weight to their views in makinginformed determination of what is in the child’s best interests.

2.3.3 Parental responsibilityA. Rights, duties and powerThe meaning and scope of PR is set out in the Children Act1989. PR refers to the rights and responsibilities parents have inrespect to their children. This includes decisions relating tomedical care and its withdrawal (subject to such decisions beingmade in the child’s best interests).28 29 PR is one of the keyprinciples of the Act; there are a number of ways by which onecan acquire PR under the Act.▸ For children whose births were registered after 15 April

2002 in Northern Ireland, from 1 December 2003 inEngland and Wales, and from 4 May 2006 in Scotland, PRrests with both parents, provided they are named (at the timeof registration) on the birth certificate, regardless of whetherthey are married or not.

▸ A child’s biological mother automatically has PR.▸ In all other cases, a father does not have PR unless he was

married to the mother at the time of the child’s birth, or hasentered into a PR agreement with her, or obtained a courtorder granting him PR.It is good practice for both parents to be fully involved in deci-

sion making as far as possible, whether or not the father has PR.Other individuals can obtain PR by court order, or by being

appointed as a guardian on the death of a parent, for example,a local authority, grandparents, foster carers, etc. There has beenextension in relation to PR by the Children and Families Act201425a for fathers or second female parents named in ChildCare arrangement Orders (previously referred to as residenceand contact orders) and it is important therefore that you estab-lish as is reasonably possible who has PR responsibility. If thereis doubt, legal advice should be sought.




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Generally the consent of one parent is sufficient to provideauthority for medical treatment.30 If, however, there is disagree-ment between parents as to the child’s or young person’s bestinterests, an application should be made to court for a determin-ation as to best interests.

There are rare circumstances, defined by case law, forexample, ritual circumcision, for which the consent of bothparents is necessary.31

Consent to the withholding or withdrawal of treatment may begiven by anyone who holds PR. However, where PR is shared, ifthere is parental or other opposition, parental equivocation ordoubt as to parental capacity or a disagreement as to what is inthe child or young person’s best interests, an application shouldbe made to court for a determination as to best interests.

A parent aged 16 and above is presumed to have capacity,unless shown not to satisfy the test of capacity under the MentalCapacity Act (MCA) 2005. A parent under 16 is assessed by ref-erence to the Gillick test (see ‘The child and young adult’). If aparent lacks capacity, the parent will not be able to give validconsent and an application will need to be made to court fortreatment to be lawfully given.

B. The interface between parental interests and wishesand professional dutiesThe extent to which a parent’s wishes are determinative havebeen considered and set out in common law in a way which iscompatible with the ECHR. A number of basic principles can bederived from these cases:▸ It is essential to involve parents in decision making.32

▸ Where intractable or irreconcilable differences of opinionarise between parents and healthcare professionals, thecourt’s intervention should be sought for a determination onwhether the proposed treatment, or withholding or with-drawal of treatment, is in the child’s best interests.32

▸ Whilst the court will have regard to the views of parents, theextent to which these will be determinative will depend on thecourt’s assessment of that view. The court is the final arbiter insuch circumstances and it may overrule the decision of a parent.

C. When parental and professional interests are in conflict (see‘Practical aspects of decision making’ and ‘Bereavement’ forpractical details of management)Most decisions relating to healthcare, including those pertainingto the limitation or withdrawal of treatment, are reached in con-sensus with the family and, where appropriate, the child.Infrequently there may be disagreement either within the treat-ing team or with the child and/or child’s family over a child’sbest interests. Such disagreement may be borne of miscommuni-cation or differences in genuine and deeply held beliefs.

Good practice requires ongoing discussion between relevantparties to resolve disagreements. Clarification of the facts, byobtaining second medical opinions or clarification and analysis ofthe ethical issues involved by clinical ethics services and others,may be helpful, as may the use of mediation techniques. Whereverpossible these should be used before referral to court is made. If amatter is referred to court, the court will wish to know whatattempts have been made—and by whom—to resolve conflicts.

2.3.4 The role of the courts in end-of-life decision makingIf agreement cannot be reached between parents, or those withPR, and healthcare professionals, legal advice should be soughtfrom specialist healthcare lawyers. Taking legal advice, of itself,does not necessarily mean that court proceedings will follow.

The court has inherent jurisdiction to grant a Declarationmaking it lawful for healthcare professionals to withhold orwithdraw LST notwithstanding the absence of parental consentif this is deemed to be in a child’s best interests.33

The court must exercise independent and objective judgmenton the basis of all the evidence and consideration will be givento, amongst other factors:▸ The likely quality of future life for the child with and

without treatment.34–36

▸ The intolerability of treatment or outcome.▸ The relevant clinical considerations.37 38

▸ The pain or suffering caused by the treatment.▸ The pleasure a child may derive from its current life including

the child’s awareness. The court will conduct a balancing exer-cise in which all relevant factors are weighed. The court willassess the benefits and burdens of giving or not giving potentialtreatments and of maintaining or withdrawing certain forms oftreatment in order to assess best interests.39–41

The court’s approach in end-of-life decisionsIn reaching decisions about withdrawing or withholding LST,the court adopts a strong presumption in favour of preservinglife. The court will balance a number of legal principles, forexample, the sanctity of life, the prohibition against inhumanand degrading treatment, the freedom of thought, conscienceand religion and the right to family life. Case law has estab-lished that:▸ The principle of the sanctity of life is not absolute. Whilst

Article 2 of the European Convention of Human Rightsimposes a positive obligation to give LST, it does not impose anabsolute obligation to provide such treatment if it would befutile and where responsible medical opinion is of the view thatsuch treatment is not in the best interests of the patient.33 42 43

▸ The right to life is not the same as the right to be kept alive.44

▸ There is no obligation to give treatment that is futile orburdensome.34

▸ When individuals ask for treatment which the healthcareprofessional has not offered and which s/he considers notclinically appropriate for the patient, the professional is notobliged to provide it. Second opinions should be arrangedand/or care transferred to another healthcare professionalwherever possible.43 45

▸ Responsibility for deciding which treatments are clinicallyappropriate rests with the healthcare professional, who mustact in accordance with a responsible body of professionalopinion.46

▸ LST can lawfully be withheld or withdrawn for a patient wholacks capacity in circumstances where commencing or continu-ing such treatment is deemed not to be in their best interests.47

2.3.5 Best interests‘Best interests’ are not purely confined to considerations of bestmedical or clinical interests, but include other medical, social,emotional and welfare factors. The court is not tied to the clin-ical assessment of what is in the patient’s best interests and itwill reach its own conclusion on the basis of careful consider-ation of the evidence before it, ensuring that the welfare of thechild is of paramount consideration.

The court will weigh up the overall advantages and disadvan-tages of limiting LST, and undertake a balancing exercise todetermine what the child’s best interests are. In cases involvingthe withdrawal of treatment, the court will need to conclude ‘toa high degree of probability’ that it is in the best interests of thechild for treatment to be withdrawn.




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2.3.6 Quality of life and legal decisionsCourts have recognised that quality of life determinationsshould be based on the individual circumstances of the persontaking account of his or her perceptions without discrimination;quality of life that could be considered intolerable to one who isable- bodied may not be intolerable to one who is born with dis-ability or has developed long- term disability.

2.3.7 Withdrawing treatmentThe courts will sanction the withdrawal of treatment in caseswhere continued treatment would be futile even though there isa presumption in favour of preserving life.33

2.4 The ethical frameworkNo single ethical framework is likely to embrace all views onquestions of withholding or withdrawing treatment but theEthics and Law Advisory Committee of the Royal College ofPaediatrics and Child Health (ELAC-RCPCH) were mindful of anumber of ethical theories and principles in shaping theirrecommendations.

2.4.1 Fundamental considerationsThe ELAC-RCPCH believes that there are three sources ofethical obligation that influence decisions about the provision ofLST in children:1. The duty of care that both healthcare professionals and

parents owe to the child; in most situations these duties arefulfilled in partnership.

2. The need to respect the internationally agreed rights of thechild which entail positive duties and negative constraints onactions relating to all children.

3. The requirements of UK law (see ‘The legal framework ’).All the above considerations overlap to some extent but all

have as their focus the best interests of the child and how andby whom these may be defined.

Duty of care and the partnership of careMoral duties and responsibility of healthcare professionalsHealthcare professionals owe special moral obligations (duties)to their patients. They must have the best interests of theirpatients as their paramount concern; this involves two principalduties.

The professionals’ first duty is to respect life and the health ofpatients by preserving life, restoring health and preventingdisease. They must fulfil this duty fairly, justly and to an accept-able standard. Any proposed treatment should confer maximumbenefit and minimise harm, consistent with its intended purpose.Analysis of harms and benefits should include relevant emotional,psychological and social factors as well as clinical factors.

Children’s healthcare professionals have an additional duty tothe child’s family. Part of good paediatric care involves an assess-ment of the harms and benefits of treatment for parents andfamilies as a whole. Challenges may arise when the duty tobenefit the child conflicts with a duty to the parents.

The professionals’ second duty is to respect patients’ right tomake their own informed choices (autonomy). They shouldrespect patients’ rights to as much self-determination as they arecapable, and respect their known or ascertainable wishes,beliefs, preferences and values. Judgements about what treat-ments to provide involve both facts and values. Professionalsshould not manipulate, coerce or deceive patients into doingwhat they (the professionals) believe would be in the patients’best interests.

Parents have both ethical and legal authority to make deci-sions on behalf of children who lack sufficient capacity to maketheir own informed decisions, provided that they act in thechild’s best interests. The parents’ special relationship with theirchild and the value that society places on preserving family rela-tionships gives them a unique role in evaluating which course ofaction will best promote the interests of the child. Normallyhealthcare professionals and parents act in partnership topromote the best interests of the child.

Respect for children’s rightsThe UNCRC (1989)22 sets out a series of principles, whichgovern how children should be treated. The following are themost relevant for the purposes of this document:▸ Article 3 states that action affecting children should have

‘their best interests’ as a primary consideration.▸ Article 24 affirms the right of the child to the highest obtain-

able standards of health and to facilities for the treatment ofillness and restoration of health.

▸ Article 13 affirms the child’s right of freedom of expressionand to seek, receive and impart information and ideas of allkinds.

▸ Article 12, affirms that ‘a child who is capable of forming his/herview has the right to express those views freely on all mattersaffecting the child, the views of the child being given due weightin accordance with the age and maturity of the child’.The Convention also affirms the right of families to be given

all necessary support in caring for their child and in the per-formance of their child-rearing responsibilities.

The legal duty (see ‘The legal framework’)There may be occasions when there is apparent or actual con-flict between ethical and legal duties and when disputes arisebetween the parties concerned. In this case formal legal opinionshould be sought and legal intervention may be required.

2.4.2 The interests of the childAdults are usually presumed to have the ability to determine forthemselves what their own (best) interests are. Healthcare pro-fessionals should respect the choices of competent adults,whether they agree with them or not. A child’s capacity todecide what their best interests are may be unknown or notdeveloped (for example, in the case of very young children).Over time children become able to express their wishes, developtheir own sets of values and gain in their ability to use informa-tion to make decisions.

Current best practice guidance actively encourages children’sparticipation in decision making (see ‘Involving children’).3

If children lack capacity to make informed choices others havelegal authority to do so on their behalf, provided that they actin the child’s best interests.

All decisions about best interests of a child involve value jud-gements about what is of value in life, how best to promote thechild’s interests, and how different or competing interestsshould be weighed against each other. Different healthcare pro-fessionals and different parents may reach different answersabout what would be in the best interests of the child becausethey have a different understanding about the relevant facts. Butthey may also disagree because they have different values.

2.4.3 Parental discretion, responsibilities, rights, duties and powerIn the UK, as in other cultures and legal systems, parents have dis-cretion for a wide range of decisions concerning their child, forexample, education, housing, basic healthcare. Parental decisions




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are generally respected in law, unless they appear to risk substan-tial harm to the child or are not in the child’s best interests.

A family’s concept of their child’s best interests is likely to bedetermined by their own system of values. A number of influencesshape a family’s collective value systems; these include religiousbeliefs, political and cultural attitudes and life experiences.Parental values may not coincide with those of professionals.Disagreements may be aggravated by the power imbalance inher-ent in the healthcare professional/patient, child/parent relation-ship. A child’s desire to make his or her own decisions may runcounter to professional or parental choices. Good clinical practiceat the end of life entails some way of resolving potential conflictsover what constitutes a child’s best interests and who decides them(see ‘Practical aspects of decision making’).

Parental decision-making should be properly informed byproviding the best information available and by presenting it ina form and at a pace they can comprehend. Parents whoseunderstanding is limited by cognitive or communication difficul-ties should receive appropriate services to ameliorate or over-come these difficulties. An advocate, for example, from thePatient Advice and Liaison Service (PALS),48 may help in assist-ing parents and child in presenting their views and wishes to theclinical team.

The central role that parents are granted in making decisionsabout a child’s medical treatment does not mean that they willalways make those decisions themselves. They may be unable orunwilling to make decisions or prefer that healthcare professionalsdecide on their behalf. However, the presumption should be thatparents will always want to take part in discussion about limitingLST and that they should always be invited to do so. A sharedmodel of decision making is appropriate in most circum-stances.49 50 Where parents do express views and these are reason-able, their values should carry great weight in decision making.

2.4.4 Parental interests, wishes and professional dutiesIn the context of life-limiting illness it is often possible forhealthcare teams, parents and children to reach agreement as towhether LST should be provided, withheld or withdrawn. Inthese the situations the interests of the child and family arelikely to coincide.

There are two sets of circumstances when there may be actualor apparent conflict between the interests of the child andhis/her parents:1. The parents may wish for limitation of treatments that health-

care teams regard as being in the child’s best interests. Thissituation is rare, but if it arises the parents’ understanding ofthe relevant facts and the reason for their judgment should beexplored. If the benefits of continuing treatment are suffi-ciently small or uncertain, the parents’ views about the bestinterests of the child should be given serious consideration.Where the benefit to the child is clear, the presumptionshould be to provide treatment to the child. An independentethical review may be helpful, but it may be necessary to referthe case to the court for an independent judgment to resolvematters.

2. The healthcare team may believe that limitation of LST is inthe child’s best interests, but the parents do not agree andwant treatment to continue. This is the more common situ-ation. Parental wishes and interests are important but notnecessarily determinative; parents’ wishes may be persuasiveif the burdens to the child of further treatments are suffi-ciently small or uncertain.Parental interests may overlap with the interests of the child

and are difficult to separate. An approach that considers family

welfare rather than purely best interests of an individual child isa model that is used by the majority of paediatricians.51 52

Nevertheless, the interests of the child should remain theprimary guiding factor in treatment decisions. Referral to socialcare and legal intervention should be considered when there isjustifiable concern that parental decisions would pose a signifi-cant risk of serious harm to the child.

2.4.5 Involving childrenAlthough an assessment as to whether a child has legal capacityto make a decision about treatment is of the binary ‘yes/no’type, appropriate involvement of children is practically import-ant and ethically justifiable, irrespective of whether they havefull capacity to make decisions for themselves. It is consistentwith a rights respecting, non- discriminatory approach.

Children’s capacity to make decisions evolves over time andat different rates that broadly accord with their cognitive ability,developmental level and experience. Thus children who havehad extensive experience of disease and its treatment, forexample, repeated cycles of chemotherapy, organ transplant-ation, will have more informed views about continuing treat-ment than an adult facing such treatment for the first time.Equally, young children may have no experience of decisionmaking and their value systems remain unformed.

There are many ways of engaging children and involvingthem in decision making. These include (a) talking with them,(b) listening to them and responding to their concerns, (c) usingappropriate techniques, for example, play to increase under-standing and (d) acting in a way that demonstrates that accountof their views has been taken.

The ELAC-RCPCH believes that there should be a presump-tion that children will be involved in decisions about treatment(including those concerned with limitation of LST) whereverpossible and at a level that reflects their ability, understandingand experience. Healthcare professionals should enhance achild’s understanding and capacity by appropriate techniques.

Some children may have no views about proposed care (forexample, because of immaturity, or when illness, injury ordisability limit their understanding). Others may prefer thathealthcare professionals or parents decide for them, althoughthis apparent preference should be checked and not assumed.

In the case of children who have extensive experience ofillness and medical treatment it will often be reasonable topresume a greater degree of competence in decision making, butassessment of competence should nonetheless be undertaken.53

2.4.6 Children with disabilitiesOne of the most challenging and difficult areas involves thequestion of limiting LST for infants and children with severedisabilities.15

According to the World Health Organization, ‘disabilities’ isan umbrella term that covers impairments, activity limitationsand participation restrictions. An impairment is a problem inbody function or structure; an activity limitation is a difficultyencountered by an individual in executing a task or action,while a participation restriction is a problem experienced by anindividual in involvement in life situations.54

In UK Law a person with disability is defined as someonewho has a physical or mental impairment that has a substantialand long term adverse effect on their ability to carry out normalday to day activities.25 The Equality Act protects people withdisabilities from unfair direct and indirect discrimination andfrom victimisation and harassment.




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Disability is a complex phenomenon, reflecting an interactionbetween features of a person’s body and the society in which heor she lives. Disabilities may vary qualitatively (they may affectmovement, cognition or sensory functions), or quantitatively,depending on their degree; there are different contributors todisability. Integration of the medical and social models of disabil-ity has been an important consideration in meeting the needs ofdisabled children and their families. The impact of a disability ona child’s life is determined by the nature of their underlyingimpairment and by the resources available to support them.Although healthcare professionals may focus on the medical ele-ments of disability (the medical model), the availability—orotherwise—of social supports for an individual and their familymay be of equal or greater importance in determining how muchthey are able to enjoy and participate in life. Individuals with dis-abilities can enjoy lives of high quality, and take part in a widerange of activities. It is important that the value individuals withdisabilities and their families place on their lives are recognisedby healthcare professionals, especially in acute medical situationswhere children and families are far removed from their normalenvironments and unable to function at their usual level.

Healthcare professionals should, whatever the clinical circum-stances, ensure that the language that they use to describe ordiscuss disabilities is neutral, accurate and appropriate. Theyshould avoid preconceived notions of what disabled childrenlook, sound or behave like and avoid following negative stereo-types of the lives of those with disabilities. They should notunwittingly contribute to avoidable raised premature death ratesassociated with disability.

Quality of life and disabilityThe relevant factors in assessing quality of life for children withdisability in relation to decisions about LST do not differ fromthose applied to those without disability; they should include: thenature of future life for that individual, the value that they willderive from it and the relative balance of positives and negativesfor them. It is not a comparative judgement about the quality oflife of different individuals, nor is it a determination that someindividuals are of higher value or worth than others. However, aswith non-disabled children there should be due consideration ofthe impact of treatments on the child’s ability to communicate,experience awareness of those around them, experience pleasure,attain goals and be independent, and the negative impact of treat-ment in terms of pain, discomfort and distress.

If a child is predicted to have an impairment in their qualityof life as a result of treatment, a primary consideration iswhether and how their experience of life may be improved. Theprovision of appropriate supports can make a significant differ-ence to the experience and quality of life of children and adultswith impairment. There is an ethical and legal obligation toprovide high-quality care to those with impairment, so as tomaximise their quality of life, insofar as this is possible.

The ELAC-RCPCH strongly believes that the provision of careto those with disability should not be reduced and there mustalways be a commitment to the provision of high- quality care forthem55 and that decisions to limit LST in children with disabilitiesshould be made on the same basis as in non-disabled children.

2.4.7 Transition to adult servicesIncreasingly children with life-limiting illnesses will live beyondtheir 16th or 18th birthdays. Arrangements for transitionshould accord with best practice, subject to audit and respectful—insofar as possible—of the wishes, preferences, beliefs andvalues of those concerned. Arrangements should accord with

professional guidance and be subject to age-appropriate and/orage-determined legislation, for example, Mental Capacity Act,24

Equality Act.25 Limitation of treatment decisions or arrange-ments for end of life should be in accordance with age-relatedethical, legal and professional guidance and statute law insofaras they differ for this age group (see for example, GMC‘Treatment and care towards the end of life: good practice indecision making’,2 Good medical practice).3

2.4.8 Axioms on which to base best practiceFrom these fundamental ethical and legal considerations flow anumber of general axioms, which may govern practice. These are:A. In relation to decision making1. Optimal ethical decision making requires: open and timely

communication between members of the healthcare teamand the child and family; respecting the values and beliefs ofthose involved; and the application of fundamental ethicalprinciples, including respect for human rights.

2. Decisions between treatment options, including those of limi-tation, withholding or withdrawing treatment, should befreely made by those with the capacity or legal authority todo so, on the basis of sufficient information. In circumstanceswhere it is not possible or feasible to undertake this process,clinically appropriate treatment should be provided unlessthere are sufficient grounds to believe that it will be unsuc-cessful or will produce significant burdens for the child.

3. Resolution of disagreement should normally be achieved bydiscussion, consultation and consensus.

4. Parents have ethical and legal authority to decide on behalfof children who are unable, for whatever reason, to expresspreferences, unless they are clearly acting against the child’sbest interests. If they are unable, unwilling or persistentlyunavailable to make decisions on behalf of their child, thecourt’s intervention should be sought.

5. The wishes of a child who has obtained sufficient under-standing, maturity and experience in the evaluation of treat-ment options should be given substantial consideration inthe decision-making process.

6. The antecedent wishes and preferences of the child, if known,should also carry considerable weight, provided that conditionsat the time for action match those envisaged in advance.

7. Legal intervention should be considered when disputesbetween the healthcare team, child, parents and carerscannot be resolved by appropriate attempts to achieve con-sensus, for example, clinical ethics consultation, use of advo-cacy and liaison services, intercession by religious leadersand mediation.

B. In relation to circumstances in which treatment might bewithheld or withdrawn1. There is no significant ethical difference between withholding,

limiting or withdrawing (stopping) treatments, given the sameethical objective.

2. The professional duty to preserve life is not an absolute onethat applies at all costs. Treatments should only be providedwhere they are in the child’s best interests.

3. It is ethical to withhold or withdraw LST if:a. such treatment would be medically inappropriate and

could not achieve its intended purpose of preserving lifeor restoring health

b. treatment would no longer be in the best interests of thechild in that its burdens outweigh the benefits

c. a competent child refuses to consent to the starting oftreatment or requests that it be discontinued




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4. A redirection of management from LST to palliation repre-sents a change in aims and objectives of treatment and doesnot constitute a withdrawal of care. Although medical treat-ment that has no overall benefit may be ethically withdrawn,appropriate and effective palliative care should continue tobe provided.

5. It is ethically appropriate to withhold or withdraw LST(subject to the above conditions) and to provide appropriatepalliative treatments (including analgesia and sedation),even if it is reasonably foreseeable that the latter mayhasten death. These steps are a desirable and acceptablepart of contemporary end-of-life care and do not constituteeuthanasia.

6. It is not permissible for healthcare professionals to takeactive steps that are intended to end the life of a child.

3. THE PROCESS OF DECISION MAKING

3.1 Practical considerations; substantial issues in decision making3.1.1 To withhold, to withdraw or to limit?Withholding, withdrawing and limiting life-sustaining treat-ments are regarded as being ethically equivalent. Ethical analysisand professional guidance, published since the original RCPCHframework document, have supported this view.2 18

In the UK withholding and withdrawing treatment are alsoregarded as legally equivalent.46

The major legal consideration in decision making is whetheror not the proposed or actual treatment would be in the bestinterests of the patient, whether adult or child.

This means practically that it is permissible to withdraw atreatment a patient is receiving if it would have been permissibleto withhold the same treatment (if it were not already beinggiven) and vice versa.

Surveys of medical and nursing staff in the UK and inter-nationally, suggest that only a minority (21–54%) believe in theethical and legal equivalence of withdrawing and withholdingtreatment. Many prefer to withhold rather than withdraw LST,and regard a decision not to start treatment as an omission toact and morally preferable to an action to withdraw.

However, even if healthcare professionals find withdrawingtreatment more psychologically and emotionally challengingthan withholding treatment, this should not influence treatmentdecisions or their practical implementation.

3.1.2 Dealing with uncertaintyIt is rarely possible to have complete certainty about outcomewhen making any clinical decision, nor is this normally regardedas necessary. However, the gravity of the consequences of deci-sions to limit LST will usually demand a relatively high degreeof confidence regarding outcomes.

In acute situations it is usually necessary to give LST first andto review the decision to continue when enough information isavailable, taking into account more experienced clinical opinion,the evolution of the clinical state, or the results of investigations.Neonates should almost always be resuscitated in the labourward, unless there is a clear decision to do otherwise made withthe consent of parents and based on appropriate guidelines.15 56

Such situations are most likely to arise in the care of neonates,including those below the limits of viability, those in whom thereis the presence of severe life-limiting conditions and/or congeni-tal anomalies and those with poor response to resuscitation.

In less acute situations it may still be possible to attain higherlevels of certainty by continuing to provide LSTwhilst waiting formore information to be assembled. This should be balanced

against the impact to the child of ongoing treatment and the suf-fering that might ensue. Decisions should not generally be rushedbut there may be some circumstances in which urgent decisionsare necessary so as to avoid a child’s suffering being prolonged.

In critical care areas, for example, emergency departments,labour wards and intensive care units, there should be frequentreview of all decisions including those related to the provisionof LST. There should be a willingness to respond to changingclinical circumstances.

Treatment should be based on the most up-to-date clinical evi-dence and/or appropriate guidelines insofar as these exist. If thereis a need to obtain more information to guide decision making, thisshould be clearly explained to the parents and child if competent.A realistic time frame for assembling information should be given.

The need for monitoring response to treatment and the meanswhereby this will be achieved should be explained. The basis forconsidering whether treatment should be continued or with-drawn should be made clear, for example, if treatment proves tooburdensome or does not achieve its intended benefits.

3.1.3 Situations in which it is appropriate to limit treatmentThe underlying ethical justification for all decisions to withholdor withdraw LST is that such treatment is not in the child’s bestinterests. There are three sets of circumstances where it may beappropriate to consider limitation of treatment.

Limited quantity of lifeIf treatment is unable or unlikely to prolong life significantly, itmay not be in the child’s best interests to provide it.

A. Brain deathDeath occurs when a child has irreversibly lost their capacity forconsciousness and their capacity to breathe and maintain theircardiovascular circulation.

A determination of death should be made in accordance withaccepted medical standards as set out in the code of practice ofthe Academy of Medical Royal Colleges.57

Death may be diagnosed following cardio respiratory arrestor, in a comatose child, it may be diagnosed following evidenceof irreversible cessation of brain stem function. When death isdiagnosed following formal confirmation of brain stem death byagreed medical criteria, intensive technological support is nolonger appropriate and should be withdrawn, unless organdonation is being considered.

B. Imminent deathHere, despite treatment, the child is physiologically deteriorat-ing. Continuing treatment may delay death but can no longerrestore life or health. It is therefore no longer appropriate toprovide LST because it is futile and burdensome to do so.

Children in these circumstances would be likely to derivelittle or no benefit from CPR. The aim should be to provideemotional and psychological support to the child and familyand to provide them with privacy and dignity for that lastperiod of the child’s life (see ‘Palliative care’ on palliative care).

C. Inevitable demiseIn some situations death is not imminent (within minutes orhours) but will occur within a matter of days or weeks. It may bepossible to extend life by treatment but this may provide little orno overall benefit for the child. In this case, a shift in focus ofcare from life prolongation per se to palliation is appropriate.




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In both ‘Imminent death and Inevitable demise’ (above) theearly provision of sensitive palliative care is ethically justifiedand in accordance with principles of good medical practice (see‘Palliative care’).

Limited quality of life: where there is no overall qualitative benefitConsidering quality rather than quantity of life is more prob-lematic because of potential or actual differences in views of thehealthcare team and children and families as to what constitutesquality of life and the values that should be applied to define it.

In some children, continuing treatment may prolong life sig-nificantly. Yet it may be in their best interests to consider limitingit if there is no overall benefit in prolonging life because of theadverse impact entailed. In entering discussions about treatmentlimitation it is important to acknowledge the importance of thevalue that the child and his/her parents place upon their life andtheir view of its quality for that child, regardless of disability.These discussions may arise in the context of the burdensimposed by a child’s illness and/or the treatments that the childis already receiving or that are proposed, their inability tobenefit from treatments, or a combination of all three.

A. Burdens of treatmentsSome forms of medical treatments in themselves cause pain anddistress, which may be physical, psychological and emotional. Ifa child’s life can only be sustained at the cost of significant painand distress it may not be in their best interests to receive suchtreatments, for example, use of invasive ventilation in severeirreversible neuromuscular disease.

It is important that all options to relieve or overcome thenegative effects of treatment are explored before proposing thatit should be limited. However if such treatment can only bedelivered at the expense of compromising the child’s conscious-ness, for example, by deep sedation, its potential benefit may besignificantly reduced. Other examples of particularly high-impact treatments include ECMO, renal dialysis and, sometimes,intensive chemotherapy.

B. Burdens of illness and/or underlying conditionHere the severity and impact of the child’s underlying conditionis in itself sufficient to produce such pain and distress as to over-come the potential or actual overall benefits in sustaining life.Some children have such severe degrees of illness associatedwith pain, discomfort and distress that life is judged by them(or on their behalf if they are unable to express their wishes andviews) to be intolerable. All appropriate measures to treat andrelieve the child’s pain and distress should be taken. If, despitethese measures, it is genuinely believed that there is no overallbenefit in continued life, further LST should not be provided,for example, in advanced treatment-resistant malignancy, severeepidermolysis bullosa.

C. Lack of ability to derive benefitIn other children the nature and severity of the child’s under-lying condition may make it difficult or impossible for them toenjoy the benefits that continued life brings. Examples includechildren in Persistent Vegetative State (PVS),i Minimally

Conscious State, or those with such severe cognitive impairmentthat they lack demonstrable or recorded awareness of themselvesor their surroundings and have no meaningful interaction withthem, as determined by rigorous and prolonged observations.Even in the absence of demonstrable pain or suffering, continu-ation of LST may not be in their best interests because it cannotprovide overall benefit to them. Individuals and families maydiffer in their perception of benefit to the child and some mayview even severely limited awareness in a child as sufficientgrounds to continue LST. It is important, here as elsewhere, thatdue account of parental views wishes and preferences is takenand due regard given to the acute clinical situation in thecontext of the child’s overall situation.

Although it is possible to distinguish these different groups ofdecisions to limit LSTs that are based on quality-of-life consid-erations, in practice combinations may be present. For example,a child or infant in intensive care may have sustained such sig-nificant brain injury that future life may provide little benefit,while both intensive treatment and future life are likely to causethe child substantial pain and distress.

Informed, competent, supported refusal of treatmentAdults who have the capacity to make their own decisions havethe right to refuse treatments (including those intended tosustain life), even if professionals regard such treatments asbeing in the adults’ best interests.

In some circumstances the child or young person, who oftenhas extensive experience of illness, clearly and repeatedlyrefuses treatment that professionals may regard as being in theirbest interests. In practice these refusals are likely to occur insituations where the young person’s life is limited in quantity orquality or both (as outlined in ‘Limited quantity of life andLimited quality of life: where there is no overall qualitativebenefit’) and where limitation of treatment may have alreadybeen considered as a possible option. Examples might include achild who requires cardiac transplantation for cardiomyopathyinduced by therapy for leukaemia, or lung transplantation forcomplications of cystic fibrosis.

These circumstances should trigger a careful and detailedassessment of the child’s/young person’s understanding of theirillness, their capacity to make such far-reaching decisions andtheir understanding of the impact of their decision on theirfamily. There should also be a thorough exploration of paren-tal/family views on treatment options, including provision ofsupportive care and determination of whether a consensusexists or can be reached (see ‘Practical aspects of decisionmaking’).

If the child/young person does understand the nature andconsequences of their decision, is assessed as having capacity tomake the decision and is supported by their parents, the provi-sion of further LST may no longer be ethically justifiable even ifit has the potential to provide some limited clinical benefit.

3.1.4 Spectrum of decisions and parental discretionIn cases where treatment limitation is considered, judgements ofthe balance of benefits and burdens may differ between parentsand the healthcare team (see ‘Parental interests, wishes and pro-fessional duties’). For example, some parents may wish that anolder child is not informed of their condition when the childthemselves may have clear insight into its nature and the health-care team believe that they should disclose it.

Benefits may be so far outweighed by burdens that it wouldnot be ethically or morally appropriate to provide treatmenteven if parents request it. This applies when the child is brain

iPVS- A state of unawareness of self and environment in which thepatient breathes spontaneously, has a stable circulation and shows cyclesof eye closure and eye opening which simulates sleep and waking, for aperiod of 12 months following a head injury or 6 months followingother causes of brain damage.




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dead, or where quality of life is seriously compromised byburdens of illness or treatment (see ‘Practical considerations;substantial issues in decision making’ above). In these situationstreatment is judged to be medically inappropriate (sometimesalso called ‘futile’), and there is no ethical (or legal) obligationto provide it.

Alternatively, benefits and burdens may be more finelybalanced. Assessing whether continued treatment is in the inter-ests of the child can be extremely difficult. There may be legitim-ate differences between individual families in their judgementsabout the benefits of treatment and of continued life. Whereparents have an understanding about the likely benefits of treat-ment and the interests of the child, their views should be givenconsiderable weight in the decision-making process (see ‘Parentalinterests, wishes and professional duties’). This means that theremay be circumstances in which some children with very similarconditions and prognoses are assessed as benefiting from contin-ued LSTwhilst in other cases the assessment may be to have suchtreatment withdrawn.

In contrast, it may be that the overall benefits of treatment areso great that the assessment is that LST should continue to beprovided, even if parents disagree with that assessment. It isuncommon for parents to oppose LST in this situation, but ifthey continue to refuse to consent, legal action should be takento safeguard the interests of the child until a formal determin-ation of the child’s best interests can occur.

3.2 Practical aspects of end-of-life care: responsibilities,treatments that may be limited, appropriate orpermissible actions

3.2.1 Clinical responsibilities of the healthcare teamHealthcare teams have individual and collective obligations toact in the child’s best interests. The healthcare team must alwaysintroduce treatments for the overall benefit of the child, andshould consider withdrawing them when they are no longer ofbenefit. All remediable causes for the child’s condition must beexcluded, for example, drugs, metabolic encephalopathy.

Because outcomes at the start of treatment may be uncertain,the team should wait until enough information (not feelings)about the child’s clinical condition and other relevant matters isavailable (see ‘Dealing with uncertainty’). This delay maybecome a source of tension for all. Information should be col-lected with the aim of providing a clear diagnosis and an indica-tion of the likely prognosis. Ultimately, decisions to withhold orwithdraw certain treatments will be based on probabilitiesrather than certainties. Sometimes children, in whom LST iswithheld or withdrawn, may survive.58–63 In these circumstancescontinuing support and palliative care should be provided. Insituations where treatment is withheld or withdrawn, the health-care team needs to be flexible in the face of changing circum-stances, as the primary intention of limiting treatment is not thedeath of the child.

3.2.2 The range of treatments that may be withdrawnThere are many different types and intensities of treatment thatit may be appropriate to consider limiting, depending on theseverity of the illness or the situation. These may include experi-mental treatments (ie, those currently not validated by researchevidence), CPR, mechanical ventilation, intravenous inotropicagents, antibiotics, CANH and ECMO.

The appropriateness of continuing or withdrawing any par-ticular treatment depends on both the indication for that treat-ment and on the justification for limiting LST (‘Practical

considerations; substantial issues in decision making’). Wherethe reason for withholding or withdrawing LST is on the basisof the burdens of treatment or inevitability of demise, it may beappropriate to limit some LSTs but not others. For example, itmay be appropriate to withhold invasive ventilation in a childwith a severe neuromuscular disorder, but to provide other lessburdensome treatments, including non-invasive respiratorysupport, nutritional support, antibiotics, or blood transfusions.In other situations, where the probability of recovery is verylow, it may be appropriate to withhold CPR, but to provideother forms of LST, including mechanical ventilation for acuterespiratory failure.

These matters, amongst other subjects relating to determin-ation of best interests, should if possible be addressed beforeacute situations arise. It is particularly important to discuss thesematters in the context of chronic life limiting or life shorteningconditions, before acute episodes occur or they become lifethreatening conditions. Forward planning enables the topic ofadverse outcomes to be discussed in a sensitive manner andenables the views of the child and family to be ascertained andappropriate care plans to be developed. Such a process facilitatesthe implementation and communication of professional guid-ance. Whilst the role of paediatric advance care plans in theUK awaits formal evaluation,64 any decision to limit treatmentmust remain consistent with the contemporary legislation of therelevant jurisdiction for example the relevant Children Act or anEducation Health and Care (EHC) plan agreed under theChildren and Families Act 2014.

It is important to be clear to all involved (including the childwhen competent and where appropriate) as to which treatmentsare appropriate and which are not, which will be provided, andwhich will not. The range of chosen interventions is increasinglydefined by end-of-life care plans, acute emergency care plans orLimitation of Treatment Agreements (LOTAs) or personal resus-citation plans65 rather than Do Not Attempt CPR (DNA CPR)Orders. Because parents may change their minds over thedetails of care plans or treatment agreements the precise detailsof both need to be re-confirmed.

Where the justification for limiting treatment is because ofthe likelihood of imminent demise or the burdens of thechild’s condition or limited ability to derive benefit (see previ-ous ‘Practical considerations; substantial issues in decisionmaking’), it may be appropriate to withdraw or withhold alltreatments except those aimed at keeping the child comfort-able. The general and specific measures necessary for this canform part of limitation of treatment agreements or end-of-lifecare plans.

3.2.3 Cardiopulmonary resuscitationThe purpose of CPR is to attempt to restart the heart or breath-ing and restore circulation after a cardio-respiratory arrest.It often includes invasive procedures, for example, obtainingaccess to the child’s airway and circulation. Its success rate isdependent on circumstance but generally lower than is com-monly perceived by the general public. Both CPR, and thephysiological process leading up to cardio-respiratory arrest,may have both harmful side effects and adverse consequences,for example, hypoxic brain damage and poor neurological out-comes. If it is unsuccessful it may mean that death occurs in atraumatic and undignified manner and often in the absence ofparents.

A number of professional bodies in the UK have publishedadvice for healthcare professionals on when to attempt resusci-tation and when it is inappropriate to do so.66 67




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In essence, an attempt to provide CPR is inappropriate if:▸ It is unlikely to be successful in restarting the heart or breath-

ing because of the child’s underlying condition.▸ There is a limitation of treatment agreement or other

end-of-life care plan that excludes its use.▸ Even if successful it is likely to produce more burdens than

benefits.▸ In practice these are the same conditions that apply to with-

holding or withdrawing other forms of treatment as set outin ‘Practical considerations; substantial issues in decisionmaking’.

Guidance for parents and carers on resuscitation and its likelyburdens, risks and outcomes is also available.68 69 Nevertheless,some parents may request that their child receives CPR despite asmall chance of success or high risk of adverse outcomes.Parental understanding about CPR and outcomes and thereasons for their request should be explored; it may be possibleto reach agreement on the extent to which treatment should belimited. If this is not practicable the possible options for theparents, including second opinions and legal review, should bediscussed. However, clinicians cannot be compelled to providetreatment they feel not in the child’s best interests.

DNA CPR decisions apply only to CPR and it does notfollow that other treatments will be withheld or withdrawn.Other treatments and care should continue to be provided if itis clinically appropriate and in the child’s best interests to do so.Some hospitals have moved away from such binary negativetype ‘orders’ to focus on more positive aspects of care whichmight appropriately be provided for children in these difficultcircumstances, in the form of end-of-life care plans or pathwaysor advanced care plans.

DNA CPR orders do not override clinical judgement or dis-cretion. For example, they may not be followed if a child suffersa cardiac or respiratory arrest from a reversible cause, forexample, acute aspiration or one not envisaged when the ori-ginal order was made.

3.2.4 Clinically assisted nutrition and hydrationAll children have a basic need for food and drink to maintainadequate levels of nutrition and hydration and to prevent theadverse outcomes associated with malnutrition or dehydration.This applies equally to those with life-limiting illness.17

Giving food by mouth is part of basic care and should be pro-vided for those who can tolerate it without serious risk, forexample, choking, aspiration, and who appear hungry and thirsty.70

Separate assessment of a child’s fluid and nutrition needsshould take place alongside assessment of their clinical condi-tion and forms a basic part of care. It will determine whetherclinically assisted provision of nutrition and hydration isrequired. CANH is appropriate in many children, includingthose with severe impairment or terminal illnesses.

CANH may be provided by naso-gastric or naso-jejunal tubeor by Percutaneous Endoscopic Gastrostomy (PEG) or in somecases by the intravenous route. Hydration may be provided sub-cutaneously as well as by the above routes.17

CANH is legally regarded as a medical treatment and onethat sustains or prolongs life.47 It may be used for symptomrelief and may increase quality of life, but it also carries risks.There may be concerns that withdrawal of CANH in semi-conscious or unconscious children may unwittingly increasetheir suffering. On the other hand, attempts to provide CANHwhen its intended benefits cannot be achieved may also fail topromote the interests of the child.

The role and purpose of CANH should be considered verycarefully. Decisions as to whether CANH should be providedshould be based on whether it provides overall benefit to thechild and should be discussed fully with the family.

CANH should normally be provided for competent childrenwho request it in order to sustain life, but its consideration willbe dependent on the circumstances of the individual child. Itsintroduction may be entirely appropriate, for example, in achild with a swallowing disorder due to a slowly progressiveneurodegenerative disease, but rarely for a child with rapidlyprogressive, disseminated malignant disease.

Because CANH is a LST it may be withheld or withdrawn inthe same circumstances and for the same reasons as other formsof LST. It would therefore not be appropriate to provide CANHin children who face imminent demise, where its addition wouldprolong or increase the morbidity of the dying process, or inthose circumstances where its lack of overall benefit to the childwarrant an exclusively palliative approach. Although withholdingor withdrawing CANH may be morally permissible, it is notobligatory. There was until recently (2014) no specific statute orcase law that governs the provision of CANH in children withlife-limiting illness, although there may be no legal obligation toprovide it in those who are dying.34 It nonetheless seems neces-sary to seek formal legal advice in these circumstances.

For these reasons it may be ethically appropriate to considerwithholding or withdrawing CANH in children in PVS orMinimally Conscious State. However, UK courts have indicatedthat for PVS cases at least an application to withdraw CANHmust be made to them. Paediatricians in these circumstancesshould obtain legal advice as to how to proceed.

Parents should be fully involved in the decision making andshould support the decision to withhold or withdrew CANH. It isimportant that comprehensive palliative care measures for thechild, including appropriate sedation and oral hygiene, are in place.

3.2.5 Muscle relaxants and end-of-life careDrugs that produce muscle relaxations (MRs) are widely used inadult, paediatric and neonatal intensive care to facilitate mech-anical ventilation. MRs on their own do not provide sedation,anxiolysis or analgesia.

MRs have been used after withdrawal of mechanical ventila-tion to treat or prevent terminal gasping, a common symptom indying patients. Terminal gasping consists of deep, irregularinspiratory efforts that are probably a physiological response tohypoxia. It is distressing for parents and staff to witness and maylead to requests that treatment is given to suppress it. However,the use of MRs in this setting is problematic; if terminal gaspingis associated with distress MRs will mask the symptoms ofrespiratory distress without treating it. They will also lead to lackof respiratory effort and rapid death, and their use may be inter-preted as an intention by medical staff to hasten death.

The ELAC-RCPCH considers that there is no justification forthe prescription of MRs immediately prior to, or following,withdrawal of mechanical ventilation in order to prevent ter-minal gasping or to hasten death. A full explanation of thesymptom of terminal gasping and its causation should be givento parents and staff together with appropriate palliative care toprevent distress and suffering.

3.2.6 Palliative carePalliative care is intended to alleviate the harms produced byillness and disabilities and is consistent with the moral duties ofmedicine. Good palliative care maximises a child’s potential tosustain their capabilities. It fulfils the duty to respect and




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promote such autonomy as the child is capable of, as well as pro-viding support for parents and carers. Palliation aims at symptomrelief irrespective and independently of any intention to providecurative or life-sustaining treatment. Parents and, where possibleand appropriate, children should be given a clear explanation ofthe nature and purpose of palliative care, especially if there is par-ental scepticism about its use or reluctance to consider it. To theextent that palliative care is able to produce benefits and reduceharms, its use from early on in life-limiting illness is desirable.

Palliative care services may therefore be introduced alongsidepotentially curative or life- prolonging treatments, or may bethe main focus of care.71 The ELAC-RCPCH believes that are-direction of management from LST to palliation represents achange in aims and objectives of treatments and does not consti-tute a withdrawal of care.

There is a strong moral duty to provide palliative care to chil-dren with life-threatening and life-limiting illnesses, whetherdelivered by a specialist palliative care team or as part of theoverall care delivered by the clinical team already caring for thechild. Palliative care support may begin whenever it becomesapparent that the child’s illness may result in premature death.It should entail consideration of the child’s physical needs, forexample, pain and symptom relief and also address the emo-tional, social and spiritual needs of both the child and theirfamily. All these aspects of palliative care can be provided wher-ever a child and family are cared for—whether in hospital, athome or in a children’s hospice. The introduction of palliativecare should not be left until a decision is made to withdraw orwithhold life-sustaining treatment. In making such momentousdecisions, families need as much information about the palliativecare support available, and their options, as they do about therole of active interventions. Without this information, theycannot make an adequately informed decision to pursue orwithhold/withdraw active interventions. Therefore, it is oftenhelpful to involve a palliative care specialist early in the courseof discussions with the family.

A palliative care team, wherever based, will be able to supportthe family and to plan for the child’s future, however short thatmay be. Many teams are able to offer support for continuedcare in a family’s preferred location. This may include transfer-ring a child out of hospital for ventilation withdrawal in a pre-ferred place of care/place of death.

Careful planning and communication is needed to ensure con-tinuity of care for the child and family, particularly when they aremoving between hospital and home. A key worker (often thepaediatric community nurse or a palliative care specialist fromthe local community, hospice or hospital) is essential to coordin-ate this, especially where it is anticipated that palliative care maybe needed for an extended period of time and involve a numberof healthcare professionals. A dedicated palliative care team willbe able to provide bereavement support for the family before andafter death. It is likely that this support can be provided in thefamily’s own community and for however long they need. A pal-liative care team can support the child and family to live in theknowledge of an uncertain future. They can provide practicaland emotional support for day-to-day care and support forsymptom management. They will work alongside other medicaland nursing teams involved in the child’s care to support chan-ging goals of care and advanced care planning.

Including palliative care support early in the course of achild’s illness will ensure that, whatever the outcome, the childand family have access to appropriate care and support, wher-ever and whenever it is needed. Palliative care should not bereserved only for those children who are actively dying.

3.2.7 Organ donationOrgan donation should be considered in any child dying in theintensive care environment. Discussions about organ donationmust be separated from discussions about withholding or with-drawing LST.72 Only after a decision has been made to withholdor withdraw LST is it appropriate to raise with the family thepossibility of organ donation after death.72 73 This would nor-mally be the function of the Specialist Nurse in Organ Donation.

Donation may only proceed after certification of death. Insome cases certification will follow confirmation of brain stemdeath by formal brain stem testing using recognised proto-cols.57 In children who die following withdrawal or withhold-ing of LST, death is confirmed and certified using standardcardio-respiratory criteria. If organ donation follows, it isreferred to as Donation after Circulatory Death. Donatedorgans are removed at a standardised predetermined shortinterval after death so as to minimise the warm ischaemic timefor the donated organs.

Discussing the possibility of organ donation with the parentsof a child who is approaching death requires skill, sensitivityand tact. In the case of older children it is important to ascertainany previously expressed views. The independence of organdonation from clinical care should be established at the outsetof any discussion.74 75

In cases where it is appropriate to do so, nationally agreedprocedures and guidelines for the identification of potentialdonors and the notification of Specialist Nurses in OrganDonation should be followed. The appropriate legal require-ments and their supporting codes of practice must be observedin discussions with the parents.76 77 In particular, it should beemphasised that the responsibility for deciding whether thechild would be a suitable donor rests with the transplant teamand not with the treating team.

3.3 Practical aspects of decision making3.3.1 The basis of decision making by teamsWhether or not an intervention is of benefit is a value judge-ment based on prediction of outcomes. Deciding what outcomesor treatments are intolerable or unbearable, or what risks areacceptable, is an intrinsic part of the decision-making process.This is not confined to clinical considerations alone and context-ual factors relevant to the circumstances of the child and theirfamily should be taken into account.

All members of the treating healthcare team need to be partof the decision-making process; their individual views should besought and accorded due weight. The latter will depend on theknowledge, understanding and experience (both clinical andmoral) that those individuals possess. Greater openness betweendisciplines and grades will enhance mutual understanding ofindividual roles and responsibilities and heighten the sense ofshared moral responsibility. The fact that some members of theteam may have difficulties in ‘letting go’ should be acknowl-edged and addressed.

Decisions should be made in partnership with the parents onthe basis of shared knowledge and mutual trust and respect.The perceptions that parents and children may have of theirroles and responsibilities in decision making should be acknowl-edged. Clinical teams need to discover the extent to whichparents and children wish to assume responsibility for decisionmaking and work within those parameters. This approachshould maximise participation with which all participants feelcomfortable and is likely to enable individuals to live with thedecisions they make.




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Ultimately, the members of the clinical team carry the sharedmoral responsibility for decision making, as part of their moraland legal duties as healthcare professionals. Teams can developmoral responsibility by reasoning together.

3.3.2 Obtaining second opinionsObtaining an independent second opinion from another clin-ician who has experience of the child’s condition may behelpful. It is essential when the team have limited experience inmanaging the child’s condition, or there are uncertainties aboutspecific items of symptom management, or where risks andburdens of a particular treatment are unclear. Many majormedical decisions require a factual second opinion for legalreasons as well as clinical assurance, for example, termination ofpregnancy, brain stem death.

Paediatricians may also seek second opinions from colleaguesto enable parents and children to come to terms with diagnosisand prognosis and to provide themselves with reassurance thattheir assessments are appropriate.

Obtaining a second opinion as to the advisability of withhold-ing or withdrawing LST will involve value judgements. Seekinga second opinion is not a legal requirement. It does conform toprinciples of good ethical decision making and the due processthat good clinical governance requires. Those providing secondopinions should receive clear instructions as to what is expectedof them and the specific questions they need to address.

3.3.3 Resource considerationsThe primary consideration in decisions about limiting LST iswhether or not treatment is in the child’s overall best interests.However, decisions about treatment options may be complicatedby resource constraints, for example, funding restrictions oncertain treatments or lack of availability of facilities, forexample, intensive therapy unit (ITU) beds and staff. Parentssometimes express the concern that doctors are influenced by alack of available resources in their judgement about the appro-priateness of treatment.

Previous legal decisions have focussed on the child’s bestinterests, rather than how resources should be used. Courts haveacknowledged that healthcare resources are limited but havegenerally declined to comment on how those resources shouldbe allocated.

Questions of what treatments are in the child’s clinical bestinterests must be separated from questions of availableresources. Costs are an irrelevant consideration if a particulartreatment clearly cannot provide overall benefit and is not in thechild’s best interests. Resource implications of providing treat-ment may be relevant in cases where the overall clinical benefitto the child is open to debate and where provision of the treat-ment may pose significant risks of harm to the child.

Healthcare teams may therefore not be justified in providingtreatments that are highly expensive or limited in availabilityand that appear to offer little benefit to the child. Ideally, thesedecisions to limit treatment should be based on clear and con-sistently applied policies developed at the institutional, local orcommunity level.78 Any decisions to prioritise patients andtreatments should be fair and based on the patient’s ability tobenefit and should avoid discrimination, for example, race, age,gender, social status.79

Before declining parental requests for treatments, secondmedical opinions and ethics consultation may be helpful. Parentsshould, where possible, be given an opportunity to find an alter-native provider who is willing and able to provide treatment.

The decision-making process should be open, honest andaccountable; it should avoid factors that could introduce dis-criminatory access to healthcare. The ethical criteria for decisionmaking should be clearly explained to all concerned.

The ELAC-RCPCH do not believe that decisions about whois offered intensive care should be motivated by resource con-straints, but should be determined by whether such care wasappropriate for that particular child at that time. However, thismight be changed in exceptional circumstances, for example,Pandemic Influenza, although actions at this time would stillneed to be in accordance with an agreed moral framework.

3.3.4 Communication as part of decision making

Within the healthcare teamWhen the question of withholding or withdrawing treatmentis raised, all members of the clinical team should have anappropriate opportunity to express their views and opinions.For those who feel hesitant or afraid to voice their opinion,sympathetic encouragement is important. Some units requirethe whole team to express an opinion and also require unanim-ity; in others the issue is discussed openly but not everyone isexpected to contribute. It is perhaps unrealistic, and may not bein the child’s best interests, to expect unanimity in support ofdecisions to withhold or withdraw treatment in every case. Theconsultant in charge of the case should lead the decision-makingprocess and should always bear the final responsibility forthe chosen course of action. Team discussions about the patientare a necessary learning experience for all concerned. Seniormembers should facilitate this by sharing and interpretinginformation from previous similar experiences, but should alsoconsider new perspectives and interpretations fairly.

Decisions to withhold or withdraw LST should be clearlyunderstood and documented in the child’s notes by the clinicalteam.

With the familyWhen the option of withdrawal of LST has been raised, the con-sultant and a senior colleague (nurse or social worker) should,at an early stage and either together or separately, discuss thefact that the issue is to be considered with parents.80 The child,as far as he or she is able, their wider family (for example, sib-lings) and any other individual (for example, religious advisoror friend) whom the parents or child nominate, should also beinvolved. The parents (and child if appropriate) should be pro-vided with adequate information and adequate time to under-stand and assess it, with time also to obtain alternate advice ifthey so wish (see also ‘Obtaining second opinions’) and if cir-cumstances permit. Siblings can also have important insightsinto the feelings of their sick brother or sister. The final decisionshould be made with the consent of the parents, though theclinical team must take the main responsibility for the decision.This can help to alleviate the burden of guilt that some parentsfeel.

A full formal record of all communications with the familyshould be kept. This should include advance care plans and per-sonal resuscitation plans. DNA CPR Orders and decisions towithhold, withdraw or limit LST must be clearly recorded inthe child’s clinical notes. A written account of the process andof the factors leading to this decision should also be recorded.

If death ensues, the consultant in charge and the nurse mostinvolved should offer to see the parents to discuss the death andthe result of the post-mortem examination, if one has beenperformed.




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No matter how careful the diagnoses during life, theELAC-RCPCH believe that a sensitive request for a post-mortemis usually appropriate. Information from the post-mortem exam-ination will help to consolidate and confirm diagnoses madeduring life and will also help to provide certainty for the parentsand the clinical team. Detailed information on the processesinvolved are available and should be explained to parents.81 Theresults of the post-mortem should be given to parents as soon aspossible and a written copy of the findings provided on request.

The parents may wish to meet with other members of theclinical team and such a meeting should be arranged by the con-sultant or the nursing staff. Valuable continuing support may begiven by an involved social worker.

Communication with primary healthcare and community servicesWhen a decision is being made about withholding or withdraw-ing LST, it will usually be appropriate to include the primaryhealthcare team and local paediatric professionals in the discus-sion, especially if they have known the child and family well. Ifthey are not part of the ongoing discussion it is essential to keepthem well informed of decisions and outcomes—especially thechild’s death.

In some situations families may prefer to care for their childat home. This may be when the focus of care becomes palliativeand some period of time at home is anticipated. Occasionallythe family may elect to have intensive treatment withdrawn athome or take the child’s body home after death. This requirescareful communication and coordination of practical arrange-ments between all parties involved, for example, hospital clinicalteam, primary healthcare team, community paediatric nursingservices and local palliative care units. Local protocols policiesand procedures should be followed and so that all involved areclear about roles, responsibilities and process. This will ensurethat there is adequate support available, good continuity of careand that plans for a time of crisis are understood by all thoseinvolved.

Levels of community services still vary in different parts ofthe country but families will need 24-h access to paediatric careand advice. Local teams will need 24-h access to advice andexpertise in symptom management in palliative care.

3.3.5 Resolution of different opinionsMembers of healthcare teams may have religious, moral or per-sonal beliefs that produce significant conflicts over withholdingor withdrawing LST within the team. For example, they mayfeel that they are unable to comply with decisions to withdrawCANH, even though it is felt to be in the child’s best intereststo do so. Conflicts of a similar nature may also arise betweenhealthcare teams and families, and between family members.The latter may be especially problematic if there has been familybreak up or where parents have very different values and opi-nions over what should be done. Where these seriously impacton the child’s care they should be sensitively explored and timeand resources made available to try to resolve them (see‘Support from external agencies’)

Where there is a lack of agreement within the team, betweendifferent teams or between the team and the family it isimportant to analyse its origins. Where disagreement stemsfrom different understandings of the issues, more time to con-sider them and better communication may resolve the tension.Where there is anxiety about the degree of certainty concern-ing the medical facts, the need for further investigations thatmight help to resolve this should be considered. Input fromreligious advisors or other important sources of support to the

family may be helpful. However, personal beliefs may dictatethat some individuals decide in a particular way whatever thecircumstances.

Unanimity on the part of the healthcare team is not essential(see ‘The basis of decision making by teams’). Those who dowish to mount a conscientious objection to a decision shouldensure that their duties are covered.

Resolving a difference of opinion between the team and thefamily may occasionally require additional input from otheragencies—see ‘Support from external agencies’. The familyshould continue to be fully supported by the team whilst thematter is being resolved. The care of the child must remain themain focus for all concerned.

3.3.6 Medical inputThe involvement of another senior clinician may help in the com-munication of bad news or in decision making. In some casesobtaining second medical opinions will be advisable (see‘Obtaining second opinions’). These may involve matters of factconcerning the child’s condition, prognosis and treatmentoptions and their outcomes. They may be provided from withinthe unit/hospital or by outside independent expert(s). The latteris (are) advisable in cases where there are fundamental disagree-ments between the family and the team, where there has been anerosion of trust and where differences in the values of the partiesproduce disagreements over what should be done.

A medical second opinion could be organised by the consult-ant responsible for the care of the child. However, to securegreater confidence in the independence of the second opinion,the family may wish to arrange this themselves with the help oftheir general practitioner or, if appropriate, with a representativefrom PALS. The family should be at liberty to change clinicianand move to another consultant if this is possible.

Support from external agenciesIn a relatively small number of cases, disagreement over treat-ment decisions may lead to escalating conflict. In such cases,external advice and/or conciliation from one of a number ofsources may prove helpful to the parties. The engagement of anumber of supportive groups, such as Clinical Ethics Committees(CECs), Hospital Chaplaincy and PALS, has helped avert manypotential court hearings.

A. Clinical Ethics CommitteesContinuing moral uncertainty as to the right course of actionmay lead to a request for an independent ethical review. In theUK, the most likely means of providing such a review is from aCEC or, more rarely, from an ethics consultation service. Thefunction of CECs may include discussion, analysis and adviceon individual cases, as well as contribution to policy making,teaching, training and research.82

The factors which are likely to result in best decisionmaking in individual cases are factual knowledge of the pro-blems and of the circumstances of the patient (child) con-cerned and good relationships between those involved. Thefunction of an ethics support service in individual case reviewsis to analyse the ethical dilemma(s) involved in order to helpparties understand the relevant facts and differing values andto try to achieve better understanding between the partiesinvolved. They may also have important mediation and concili-atory functions and may serve to protect patients’ rights.Outcomes of such discussions should form part of the child’sclinical record.




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In current UK practice acceptance of any recommendation bya CEC/Service is optional. Any UK CEC/Service needs to retainits independence so as to maintain its moral integrity andarrangements for this need to be built into any formal provisionof ethics support.

B. Chaplaincy/religious leaderWhere issues have religious or cultural components, religiousand out-of-hospital leaders can be helpful for families and hos-pital staff in recognising and resolving them.

C. Patient Advice and Liaison ServicePALS are a central part of the new system of Patient and PublicInvolvement (PPI) in England.83 They are available in all NHSTrusts. Services provided by PALS include:▸ Confidential advice and support to patients, families and carers.▸ Information on the NHS and health-related matters.▸ Confidential assistance in resolving problems and concerns

quickly.▸ Information on and explanations of NHS complaints proce-

dures and how to get in touch with someone who can help.▸ A focal point for feedback from patients to inform service

developments.▸ An early warning system for NHS Trusts, Clinical

Commissioning Groups and PPI Forums by monitoringtrends and gaps in services and reporting these to the Trustmanagement for action.

D. Alternative Dispute Resolution and mediationAlternative Dispute Resolution (ADR) services are increasinglyused to address disputes over such matters as access and custodyagreements that come before Family Courts. They include medi-ation services and these are currently being trialled in disputesabout end-of-life care.

E. Legal inputIn most cases, the healthcare team and parents will come toagree over a course of action. If agreement cannot be reached,legal advice should be sought from specialist healthcare lawyers.Every Trust will have an in-house solicitor, legal advisor ormember of the Governance Team who will be able to provideinitial advice. Another source of advice is the Children andFamily Court Advisory and Support Service (CAFCASS) whocan be contacted by telephone. The hospital should facilitateaccess to independent legal representation.

Taking legal advice does not necessarily mean that court pro-ceedings will follow. If court intervention is considered neces-sary, the parents or their representative should be notified assoon as possible of any intended action. Decisions as to whattreatment is in a child’s best interests will be heard by a Judge inthe Family Division of the High Court. At such a hearingparents will, if they choose (not all families want to be heard orrepresented), be able to express their own views and seek alter-native opinion(s). The court will wish to ensure that the parentshave had the opportunity to seek independent representationand to seek a second opinion should they wish to do so.

Although a duty Judge is available to hear applications at anytime (even by telephone) this does not negate a duty on clini-cians to seek the court’s involvement in a timely manner and asearly as possible (see ‘The role of the courts in end-of-life deci-sion making’). Emergency applications, where the team couldhave reasonably foreseen the need for an application, mayattract adverse comments.

4. BEREAVEMENT

4.1 FamiliesProfessional duties and responsibilities do not cease when achild dies. The quality of care at the end of life and afterthe child’s death can have a major impact on the family’sgrieving.84 85

Each site where deaths of children occur should have specificpolicies in place which provide guidance for staff in addressingthe needs of bereaved families and which describe the proce-dures that need to be followed when a child dies. This informa-tion should be readily available to all who require it. It shouldinclude details about asking for post-mortems, the needs of dif-ferent religions, beliefs and cultures and the provision ofmementos for the family. There should be practical guidance onthe steps that families will need to take for registering the deathand making funeral arrangements.

An offer of follow-up should be made to all parents of a childwho has died. Follow-up should be provided to all those whoaccept it; it may be most helpfully provided by a home visit.Establishing contact between 1 and 2 months after the deathgives the opportunity to discuss the results of a post-mortem orother investigations which may shed more light on the precisecause of death. Such contact also allows professionals to answerfamilies’ medical questions and to explore their feelings. Someteams are able to offer continuing, but gradually diminishing,contact with acknowledgement of special anniversaries, such asthe child’s birthday and date of death.

Grief is a normal reaction to bereavement and over-medicalisation of it should be avoided. Many families will findtheir own support in different ways and at different times.Families should be given access to information sources thatenable them to make appropriate choices from the support andother services that are available. More counselling from supportorganisations or other forms of therapy can be offered to fam-ilies requesting such help.

4.2 The healthcare teamMembers of healthcare teams will also experience a wide rangeof emotions, both in the short term and over time. Work pres-sures can interfere with the resolution of these issues and failureto address them can lead to stress, sickness, lowered morale anddivisions within the team.

Many team members may themselves need support, but mayhave difficulties in acknowledging their needs or accessing ser-vices. Discussion sessions can be helpful but they may be com-plicated by questions of status, social taboos or defensivebehaviour and protection. Senior doctors may find it difficult toshare their stresses and uncertainties with more junior membersof the team. Certain groups, for example, night staff, may bespecifically vulnerable or even unintentionally omitted fromsuch discussions. Each person has different needs, which may bemet in a variety of formal and informal networks and supportsystems. Some are helped by maintaining contact with the fam-ilies and by going to the funeral, although both of these canalso bring new stresses. Even with a formal support network theappropriate individuals are not always available when they aremost needed.

Dealing with these issues appropriately will have a beneficialeffect on staff morale and should reduce staff sickness and turn-over. Management need to be aware that resources allocated inthis area will support their staff, benefit the organisation andimprove healthcare delivery.




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4.3 Key goals in the provision of bereavement support

▸ The family should be allowed time and privacy with their child.▸ Parents should feel in control of events before and after death

and should be able to follow their own choices and wishes.▸ Bereavement support should be offered, based on assessed

needs.▸ The bereavement needs of siblings should be recognised and

support provided.▸ The parents may want details of those they can contact to

discuss any plans for future pregnancy; they may requirereferral to a specific genetic service.

▸ The needs of care staff should be considered, including sup-porting staff in ending their involvement with the family aspart of an agreed bereavement plan.

▸ Staff support is essential and debriefing and ongoing supportand supervision should be readily available.

▸ Communication with all persons and agencies providingbereavement services is essential.

Details or resources that may be useful in addressing the issuesraised by bereavement are given in appendix 1.

5. FUTURE PRACTICALITIES

5.1 TrainingAll healthcare professionals should have access to continuingeducation in communication, ethics and law for example, MCA,Equality Act, especially as they pertain to withholding, withdraw-ing and limiting LST. Although these topics do form part ofundergraduate training for all clinical disciplines, there remains aneed for continuing professional development, according to prin-ciples established in professional guidance, for example, fromGMC, Nursing and Midwifery Council, British MedicalAssociation, Royal College of Nursing, Royal College ofMidwives and other professional bodies. Ongoing delivery oftraining and the facility to reflect on challenging issues are keyelements of good clinical practice. It is essential that the psycho-logical and spiritual dimensions of care continue to be fully con-sidered. Hospitals may also consider having an educationalclinical ethics forum that periodically meets to review difficultcases or establish other mechanisms for this purpose. Childbereavement organisations and parent support groups could alsohave a useful role in providing such training. The assessment ofethical issues, communication, knowledge and approachesshould continue to form a mandatory part of the assessment ofcompetence in clinical training.

5.2 ResourcesAlthough clinicians do not and should not give paramountimportance to resources in decisions about care, such considera-tions have always entered into discussions about treatmentoptions. In the current financial climate, offering expensivetreatment inevitably uses funds that may be better used else-where. Debates about the fair allocation of scarce resources willincreasingly form a backdrop against which treatment decisionsare made. The ELAC-RCPCH do not feel that decisions aboutwhich child is offered intensive care should be resource moti-vated but should be determined by whether such care is appro-priate, but they accept the need for further debate and greatertransparency over questions of resource allocation.

5.3 Research/auditIn units and departments where complex treatment decisionshave to be made it is important that the process of decision

making is subject to review and that the process conforms toprinciples of good clinical governance. In particular, it is helpfulto have feedback from affected families on an ongoing basis.

Children’s ability to cope with distressing news and their abilityto make decisions should continue to be assessed by appropriateresearch. More focus will be needed on ways of communicationthat involve relevant developing technologies. This may be par-ticularly important in ensuring that the voice of those with disabil-ities and their carers form part on ongoing treatment dialogues.

The UK Census86 has confirmed that 1 in 10 children areclassed as from minority ethnic groups and therefore decisionson limitation of treatment need to be underpinned by anunderstanding of cultural ‘diversity’. This remains a relativelyunder-researched area, but is important in the face of increasingcultural diversity in the UK.

5.4 Clinical ethics servicesThere is agreement that support, guidance, teaching and trainingin the sensitive areas we have described are required for all staff.But there is no consensus as to how these aims are to be achievedand how the impact of providing ethical support is to be evaluated.A greater interest in qualitative research and the interface betweenthe Humanities and Medicine may provide both the necessaryimpetus and the tools to accomplish this task. The establishment ofa UKClinical Ethics Network87 has provided a forum for exchangeof ideas, methodologies and protocols and also support for thoseattempting to establish, maintain or validate their services.

Acknowledgements The Royal College of Paediatrics and Child Health would liketo thank the past and present members of its Ethics and Law Advisory Committeeand those organisations and individuals who contributed to the consultations andtherefore composition of this final document. We would like to especially thankDr Richard Hain and Together for Short Lives, the members of the RCPCH YouthAdvisory panel and Mr John Pettitt the ELAC administrator and all other members ofthe RCPCH who contributed to the production of this framework.

Collaborators John Pettitt, Richard Hain, Maggie Wearmouth, Patricia Walsh,Fiona Steart, Jillian McFadzean, Robert Wheeler, Bharti Meparni, John Wyatt, JulieBayliss, Robin Powell, Julian Roberts, Bea Teuten, Farrah Rajah, Zoe Picton-Howell.

Competing interests None.

Ethics approval ELAC.

Provenance and peer review Commissioned; internally peer reviewed.

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Appendix 1SUGGESTED BEREAVEMENT RESOURCES

BabylossA website service providing online information and support foranyone affected by the death of a baby during pregnancy, atbirth or shortly afterwards.http://www.babyloss.comEmail: [email protected]

Child Bereavement UKChild Bereavement UK supports families and educates profes-sionals when a baby or child of any age dies or is dying, orwhen a child is facing bereavement. In addition to telephoneand e mail support, they run groups for bereaved children andtheir carers and (in some areas) are able to provide individualface-to-face support.http://www.childbereavementuk.orgFreephone helpline: 0800 02 888 40Email: [email protected]

Childhood Bereavement NetworkThe Childhood Bereavement Network (CBN) seeks to ensurethat all children and young people in the UK, together withtheir families and other care givers, including professionalcarers, can access a choice of high quality local and nationalinformation, guidance and support.http://www.childhoodbereavementnetwork.org.uk

Cruse Bereavement Care Youth Line RD4UCruse’s young people’s website, designed by young people foryoung people (aimed at young people mainly between 12 and18 years old).http://www.rd4u.org.ukFreephone Helpline: 0808 808 1677Email: [email protected]

Child death helplineHelpline for anyone affected by the death of a child of any age,under any circumstances, however long ago. Staffed by trainedvolunteers, all of whom are bereaved parents.http://www.childdeathhelpline.org.ukFreephone helpline: 0800 282 986 or 0808 800 6019(for mobile phones)Email: [email protected]

The Compassionate FriendsThe Compassionate Friends (TCF) is a charitable organisationof bereaved parents, siblings and grandparents dedicated to thesupport and care of other bereaved parents, siblings, and

grandparents who have suffered the death of a child/children.Available for support and information daily. The line is alwaysanswered by a bereaved parent.http://www.tcf.org.uk. This includes a website for bereavedsiblingsNational UK helpline: 0845 123 2304Northern Ireland Helpline: 0288 77 88 016

Grief EncounterGrief Encounter provides bereavement support for children,young people and adults. They are a child focused, open accessspecialist bereavement service providing support via their website,helpline, e-counselling, one-to-one support and residential campshttp://www.griefencounter.org.ukTel: 020 8371 8455Email: [email protected]

The Lullaby TrustThe Lullaby Trust provides specialist support for bereaved fam-ilies and anyone affected by a sudden infant death. The Helplineoffers the support of befrienders, who are themselves bereavedparents, grandparents and other relatives. Support can bearranged via the Helpline, usually by phone or email, althoughface-to-face meetings may also be possible.http://www.thelullabytrust.org.ukFreephone helpline: 0808 802 6868Email: [email protected]

Sands—Still Birth and Neonatal Death SocietySands offer support to anyone affected by the death of a babybefore, during or shortly after birth. They offer emotionalsupport and information for parents, grandparents, siblings,children, families and friends, health professionals and others.Support is available through the telephone helpline, e mailsupport groups, Sands groups and an online forum.Website: http://www.uk-sands.orgNational helpline: 020 7436 5881 (9.30–17.30 Monday–Friday)Email: [email protected]

Winston’s WishWinston’s Wish can offer a range of practical support to chil-dren, families, professionals and anyone concerned about abereaved child. They can provide support in individual, groupand residential settings via their national helpline, interactivewebsite and publications.Website: http://www.winstonswish.orgNational helpline: 08452 03 04 05Email: [email protected](All the above information is correct at time of going to press)




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